The world of Shannon and Matt McNeil was turned upside down when their two children, Waverly and Oliver, received the same shocking diagnosis — both had a rare and fatal genetic condition called Sanfilippo syndrome, which would likely cause them to eventually die as young teens.
RELATED: Devon Still: 'I got my strength from Leah' during her cancer fight
Children with Sanfilippo syndrome are missing an essential enzyme needed to break down and dispose of long sugar chains in the body called mucopolysaccharides. These sugar chains accumulate in the cells causing progressive damage. At first, these children develop normally until age 3 or 4, then plateau and eventually lose all of their skills. There is no treatment or cure for Sanfilippo, and life expectancy varies.
The McNeils have dedicated their lives to providing Waverly and Oliver with the high level of care they need. After all, there aren’t many qualified baby sitters who will hook clients up to feeding tubes, transfer their wheelchairs and administer scores of medication.